What to Know Down Below®
Welcome to What to Know Down Below® by Tina’s Wish! We’re here to empower you with the knowledge and tools you need to advocate for your own gynecologic health.
Knowledge is power, and we encourage everyone to join us in learning more about what you need to know, down below!
What to Know Down Below®
Knowing Early Means Knowing Hope: The Need for Ovarian Cancer Early Detection
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Hosted by comedian and 2x ovarian cancer survivor, Karen Mills, and featuring Dr. Gizelka David-West, Gynecologic Oncologist at Northwell Health and lead singer of the band N.E.D.
This episode was released in December 2023.
Welcome to What To Know Down Below by Tina's Wish. We're here to empower you with the knowledge and tools you need to advocate for your own gynecologic health. Knowledge is power, and we encourage everyone to join us in learning more about what you need to know down below.
Speaker 2Hi everyone. My name is Karen Mills, and I've been a nationally touring comedian for over 25 years, and am a two-time ovarian cancer survivor for the third and final installment of our ovarian cancer 1 0 1 series. I'm here with Dr. Gazelka David West to discuss the very reason Tina's Wish was founded. The need for an early detection test for ovarian cancer, similar to Tina Brossman story. My symptoms were unclear and attributed to other conditions. The Tina's wish team shared with me that Tina was not angry for having ovarian cancer, but rather angry that she didn't have a fighting chance against this disease. For me, I , um, I, I had one episode where I had some pretty intense pain, but it lasted about 30 minutes. And, you know, I don't know anyone who hasn't, I had cramps at one time or another, and so I just completely blew it off. And then I had a , um, a , a scheduled , uh, physical coming up, so that was like six weeks later. And I almost even forgot to mention it because it was like, as I said, it only happened the one time. And , um, the nurse practitioner was examining me and when she got to my abdomen , um, all the blood Dr . Drained out of her face and she said, you have a huge mass. And she immediately sent me for a sonogram and a ultrasound, which didn't tell us anything except , uh, that it was huge. And they thought it might be attached to my right ovary, but couldn't be sure. And of course, everything happens on a Friday. So , uh, I couldn't get <laugh> a CT scan until the following week. And , um, and then I met with the oncologist to go over the results. And , um, and I, it turned out that, you know, I thought it was one huge mass, but my right ovary was the size of a cantaloupe and my left ovary the size of a grapefruit, and it was just kind mushed together, and that's why they thought it was one mass. And just , um, doctor, just to be clear, mushed together, I think is the , um, technical term, <laugh>
Speaker 3Right on . Absolutely . I was gonna say that myself. Nothing more technical than that . <laugh> .
Speaker 2And so when I , uh, the oncologist went over my radiology report and said that my , um, uh, ca 1 25, which normal range is zero to 35, was 11,000. And I , I was actually very offended because , um, he went on to tell me that the, the radiology report said that my pancreas was unremarkable. And I have been very pleased with my pancreas <laugh> .
Speaker 4So
Speaker 2I didn't think that was fair. <laugh>.
Speaker 3I know some of it . I do laugh a lot with patients. I'll tell 'em it's good to be boring. It's good to be
Speaker 4Unremarkable <laugh> . Oh , but Karen ,
Speaker 3You had also mentioned like the bloating that you had that you kind of chalked up to, like menopausal stuff, right? Like that just, you didn't even clue into that at all.
Speaker 2Yeah , no, I was, I was tired, I was bloated and I, it almost, it never felt like I could completely empty my bladder. And , uh, you know, and that describes every menopausal woman I know. So I thought that's all that is, is menopause. And so that's why I didn't go in earlier. And , um, and that's why you have to really, you know, be aware that when something's not right with your body, just be sure that the doctor determines that it's menopause and not you, because , uh, you , you really need to advocate for your own health and be sure.
Speaker 3Right? Absolutely. Absolutely. And, and , um, you know, as we mentioned in one of our previous talks , um, even if a doctor dismisses you right? And oh , I didn't find anything, but you're still having these symptoms, don't stop, go to somebody else, get another opinion, it's okay. I don't take offense to second opinions, third opinions, do what you need to do to get the right answers and help yourself.
Speaker 2Well, and to be clear, there is no early detection test for ovarian cancer, correct?
Speaker 3Correct. There is no early detection. Um, you know, we talk about mammograms for early detection of breast cancer colonoscopies for early detection for colon cancer, pap smears, early detection for cervix cancer, but none of them , um, will test for or screen for ovarian cancer. There is no early detection.
Speaker 2And so just going for an annual checkup is not enough. Correct? Correct .
Speaker 3Correct. It's not enough. It's helpful, you know, course our conversation with symptoms, but it's not enough that papsmear that they do on your annual te on your annual GYN visit is not screening for ovarian cancer.
Speaker 2And we discussed earlier that , um, you should, however, continue to get pap smears even after you go through menopause.
Speaker 3Correct? Correct. And I will tell you, another kind of patient story that I've seen many times over is the 60 something , 70 something year old woman , um, who comes in and says, you know what? I haven't seen a gynecologist since my last kid was born. And they're in their , you know, they're 30 something years old. And that's, that is the patient that, you know, on ovarian cancer, we find, you know, 'cause they just hadn't gone and symptoms came and went, or they'd started developing symptoms but didn't seek out care with the gynecologist. Maybe they were going to their primary care and the primary care didn't pick up on, on the cues or the clues and , um, then advanced ovarian cancer. But so , um, after you're done with having your babies still go to your gynecologist after menopause still go to your gynecologist, it's important because the conversations come up, family history discussions come up, symptoms discussion comes up, and , um, if you're talking about it, if somebody is paying attention to you, you'll have a test done earlier than, than you would need necessarily, and you may find something and detect something earlier than later ,
Speaker 2Later . And even though a pap smear does not detect ovarian, it does, it can detect other , uh, gynecologic cancers. Correct.
Speaker 3Specifically cervix cancer. Okay . It's really , um, the only it's designed to test and screen for cervix cancer. What
Speaker 2Is the difference between cervical and ovarian?
Speaker 3Sure. So great question. Again, this kind of brings us back to anatomy. I wish I had like a little chalkboard to draw a picture for people. Um, but um, so the uterus and cervix are one structure, right? So they are , um, um, they're connected and then the fallopian tubes in the ovaries are also connected to the uterus and kind of they're all part of this reproductive , um, organs. And , um, cervix cancer starts purely at the cervix at that level of the , um, the lower level of this , um, anatomical structure, which is connected to your vagina, whereas the ovaries are kind of floating higher up in your pelvis, deep in your pelvis. It is , they're , they're away from each other. They're not immediately connected. And so , um, they're very, they're essentially different organs, if you will, just part of this tract. Right. And so that's why they're considered separate entities and they're not linked really at all. Right. Your ovaries are one part of the anatomy and the cervix is another part.
Speaker 2Uh , and I , uh, when I was diagnosed, I luckily was an early stage and they first said stage one, but then later , um, they said upgraded, I call it downgraded <laugh> to stage two because they found a spot in my , um, fallopian tube.
Speaker 3Correct? Correct. Yeah. So it's kind of, it , um, it left the ovary already and kind of traveled to the surfaces or the canal of the fallopian tube. Right.
Speaker 2And is that what happens with more advanced stages? Is it, it just has traveled further?
Speaker 3Correct. And so what I, I described to my patients is , um, ovarian cancer, again, can start in the fallopian tube , um, or on the surface of the ovaries. And then what happens is these cancer cells kind of spray their cells out into the abdominal cavity like sand. So like, I think of, think of like a salad bowl with like , um, I'm thinking of your intestines, like sausages and like <laugh>
Speaker 2<laugh>
Speaker 3Put sausage in their salad, but whatever. Think of a bowl full of sausages and you throw sand on them and like the sand coats every surface of everything in that bowl, even the lining of the bowl. Right. They have this, are you picturing this or am I giving you visual ?
Speaker 2Yes , I'm , oh yeah, I'm,
Speaker 3So that's advanced stage ovarian cancer. It's those little bits of sand that has traveled all throughout this abdominal cavity and has coated surfaces and has creates masses on those surfaces, creates fluid on those , um, in that cavity. So a lot of times maybe there might not be this big mass like you had, but the belly is just full of fluid. And so another story is a patient comes at , oh, it , my , I started having to get bigger pants or my belts size was, you know, getting bigger and bigger, but it was the holidays, so I thought I was just eating too much. But really it's their belly filling up with fluid because these cancer spots are coating the surfaces of , um, the organs and the tissue in this abdominal cavity.
Speaker 2Ah , well, you know, I, I played senior basketball, I played college basketball and I was playing in a senior , um, uh, over 50 tournament , uh, whoa . Yeah, right before I was diagnosed. And , uh, I took a charge and I, you know, I think about that sometimes. I mean, if, if tho if my, because my ovaries have ruptured
Speaker 3Yeah. You know, rupture of these masses is not typical presentation, you know, it's really fascinating how the organ can expand.
Speaker 2Oh, that's good
Speaker 3To know . And like just kind of compensate for that expansion and get bigger and bigger without rupturing. But yeah, I mean, I think if you had enough of a trauma against the belly with such a big mass, then yeah, it could kind of like a water filled balloon. Right.
Speaker 2And, and that would that then spread the sand further, right ? Yeah ,
Speaker 3Sure. So the , the fluid in that mass has the cancer cells and it absolutely. That can then spread the , um, cells throughout.
Speaker 2And the point you made with , um, the , like the lady who hadn't had a pap smear since she had her kids or something. I mean, it is so important to establish , uh, a doctor that you go to on a routine basis and share your family history and, and knows you and can help you through things that seem strange or , um, something that makes you uneasy or that knows your history. All that's very, very important to maintain. Correct.
Speaker 3Absolutely. Absolutely. You know , um, there's some patients who keep the same primary care doctor for decades, right. Or the same gynecologist, and sure. If you have that luxury to have the same person, great. Plug yourself in with, with somebody, make sure you're seeing somebody on a yearly basis. And if you have a strong family history, it's even more important, right. Um, to discuss, you know, what your options are. What kind of surveillance should you have, if any? What kind of screening options could there be, if any? Right. I mean, it's , um, um, we're constantly doing more and more research every day . There's , um, new information coming out. And so you're not gonna be , um, privy to that if you're not going to the doctors. You're not going to speak with the medical professionals.
Speaker 2And I don't want this to sound like I would put down any doctor, but , um, but if you're with someone that is, you know, you may experience say, but they are not as up on , uh, new things in me , the medical field or new research. I mean, it is important to, you know, as you say, get second opinions and that type of thing. But, you know, I know friends who have doctors that have been practicing for 40, 50 years that are like, oh, it's just menopause, you know? Yeah .
Speaker 3Yep . Absolutely. You gotta a hundred percent. And look, there's no offense to be taken anywhere if you're, if you're sitting across from a doctor who is just not up to speed with, you know, the times who's kind of stuck in the certain time interval that just doesn't seem, you know, up to snuff, then run <laugh> . Another doctor .
Speaker 2I didn't wanna sound too , uh, joking .
Speaker 3No, I mean, it's, you know, I , it's , um, just like in any profession, there's excellent, good, mediocre bad. I mean, it's, it's the reality that we all have to understand and
Speaker 2It's true. Um,
Speaker 3Going word of mouth, knowing who your friends are seeing who is highly recommended , um, doing your own research, that's part of advocating for yourself, right? Don't walk in blindly to , um, um, into your appointment. You know, try to , um, get as much as you can ahead of time. That can potentially help , um, with the, with the conversations that you're gonna be having.
Speaker 2Why do you think we don't have an early detection test yet? Or are we getting any closer?
Speaker 3Yeah, so , um, in, you know, the years of my training and my practice, it's definitely been underway. There's always research being done. It's, it's just a very hard disease to, to target. Just like I said, the ovaries are deep in your pelvis. They're away from what we can see and feel on those pelvic exams or during a pap smear, right? And so more intricate testing and designs have to be , um, developed to help us really clinch an early detection test. And , uh, I think that's big mission of Tina's wish, right? This is a huge part of what they're doing. Uh, they're focusing on tackling this riddle and figuring out, you know, how can we do this? And there's a lots of collaboration with , uh, great , uh, cancer institutions and researchers that are looking at various , um, strategies and various tests, right? I think , um, there are lots of funded research already underway, and a couple of the trials are , um, in clinical study phase. What does that mean? That means that it's starting to be tested , um, outside of the laboratory. Um , patients, certain patient populations are being consented and screened and counseled to undergo these tests, which is a major , um, um, milestone in research when you can get clinical , um, study phase. And so there's hope, there's lots of hope and progress being made. I think we're just unfortunately not there yet
Speaker 2Because 80% of , uh, of people diagnosed at an advanced stage is a lot different survival rate than , uh, compared to an early stage. I was very fortunate that mine , uh, was called early, but , um mm-hmm <affirmative> . But it , it's just so important.
Speaker 3Absolutely. Absolutely. Um, you know, five year survival, as we mentioned , um, for advanced stage is really about 27%, but early stage it's upwards of 90% and beyond. So it's a big difference. And so , um, cancer sucks. Nobody wants it, but if it can be found early, definitely impacts survival for sure.
Speaker 2And how is, how is it actually detected?
Speaker 3Right? So , um, you know, the patient who has these symptoms, they , um, gets a workup , um, an imaging scan , um, a pelvic ultrasound or a CT scan or a PET CT scan will then , um, give us the , um, the radiographic evidence that there is high suspicion for cancer. So when you have patients with presenting with advanced stage who have that fluid in the belly that I mentioned, or those sand like particles, the radiologists can put needles in that fluid and suck it out. And pathologists can then see the cancer cells floating there to make a diagnosis, or if they can biopsy some of those particles or sand implants, or if there's things , um, that a needle can kind of get into to biopsy, then the pathologist looks at that tissue and proves the diagnosis. Or like in your case, you went to surgery, right? And they took these big masses out, and it was only after your surgery. Did you know for a fact it was ovarian cancer, right?
Speaker 2Uh , yeah . Yes, exactly. And, and they, they said there's no reason to biopsy because they're so large, they've gotta come out regardless, so ,
Speaker 3Correct, correct. And , um, even if they would've biopsied such a big mass like that, they may not have gotten the whole picture. I, you know, I've had cases where the big mass was biopsy , but you biopsy one corner of the mass, but then the other corner is where the cancer is, you know, so, you know, so if it's the masses the size of a cantaloupe, just imagine a cantal, a picture, a cantaloupe in your head, you stick a needle on the top of it. You're not, that needle didn't determine what's on the bottom. Right,
Speaker 2Exactly. And, and they said I had fibroid tumor mixed in, so, yes ,
Speaker 3Exactly. So if they had stuck a needle in any of that, they could have picked up a piece of the fibroid and said, oh, it's just fibroids. Okay, you can wait another X number of weeks before your surgery. Right. And then you wouldn't have had early stage ovary cancer. So , um, this is another reason where biopsying the ovaries for early detection screen is just not good enough. We need something that's kind of at a cellular , um, particulate level, something that , um, picks up floating cells or floating DNA , right? Like something like maybe a pap test for the ovaries, something that maybe , um, is , um, so specific to the cell makeup of ovaries or DNA of ovary cancer that swabbing inside that uterus , um, could maybe find something that's floating around in that tract . You know what I mean? It's , um, I'm getting into the nitty gritty here and I don't wanna lose people, but , um, it's, this is kind of what the research is exploring right now.
Speaker 2And are you hopeful that we will have that? And
Speaker 3I am, I am hopeful. I mean, Tina's wishes really been doing amazing things with their partners that they're working with. Um, the research studies that are ongoing right now, I'm absolutely hopeful that we're, we can only get closer. We can't get any farther away from it. I mean, there's so much that's being done and , um, so many resources are going into it now. Um, I think we definitely are, are gonna get there.
Speaker 2Well, that's certainly what we all pray for and , um, continue to work for. And we're so grateful to Tina's wish for all they're doing , uh, to make these huge contributions to , um, to gynecologic health. So , um, absolutely. Any other , uh, closing comments? Um,
Speaker 3Uh, let's see. I think we nailed it, Karen.
Speaker 2I think we did too. You know, the only , the , the one thing that has shocked me , um, was that, you know, I'm a nationally touring comedian. I travel all the time. So you would think that at some point, you know, I'm always going through those X-ray machines. Yeah . PSA agent , you pulled me aside.
Speaker 3Basketball in your belly doing
Speaker 2<laugh> . Yeah. I don't see a gun, but you're packing a fruit stand lady, <laugh> ,
Speaker 3You're absolutely right that they need to be educated too. Maybe they'll be listening to the podcast. They'll, they'll, now they'll have a more awareness, right. And the next lady that walks through with that little , like , cantaloupe in her belly, they'll say, Hey , you gotta go to your gynecologist <laugh> .
Speaker 2Yeah, exactly. I think it should be like a , you know, get a, get a double , uh, uh, screening. A as you go through , uh, security. It makes sense to me . Exactly.
Speaker 3Exactly. We need to put up a sign. We gotta , like <laugh> .
Speaker 2Well , Dr. David West , uh, thank you so much for being our subject matter expert and an expert. You are. Uh, we, I appreciate all your overview on ovarian cancer and , uh, and your time and all that you do to improve women's health. And a huge thank you to everyone listening. We hope you will continue to share the information you take from this podcast with those around you. And, you know, everyone deserves to know early and know hope, and this is our mission at Tina's Wish. Stay tuned for more information on upcoming episodes.
Speaker 1For more information about gynecologic health, visit tina's wish.org/what to know . That's tina's wish.org/w H-A-T-T-O-K-N-O-W . And like, follow or subscribe wherever you listen to your favorite podcasts.